Hi mommies!
I was surfing the internet for more info (has always been doing so) & chanced upon this forum! My little girl just turned 1 yr old this month & is g6pd deficient. Makes me keep wondering how come she is g6pd deficient when my hubby (he said he did test during NS so should be clear) & I (I had no idea I may be a carrier, my parents didn't even know what g6pd was too before my little girl popped) don't have it... So I guess I must be a carrier. I have a couple of issues to share/seek your opinions on actually. In fact, I know people with g6pd deficiency can still lead normal lives (thankful she is all healthy & normal otherwise) but I can't help but feel stressed (esp over food restrictions) and yes, upset too, like I brought it upon her. Initially, when the pd came to inform me, I blamed myself hard.
Anyway, I'm breastfeeding still, so I am avoiding many foods in fear of affecting her. The 'lucky' thing so far is, she is diagnosed with supposedly mild deficiency, but also makes me also wonder if that means it would be even harder to know if any foods/drugs did affect her in any way? And that people around me might take this even more for granted?
1) I understand that mothballs and fava beans are a big no no. But what abt the rest? I got a pamphlet (from my pd) under HPB which is quite general stating that certain beans, nuts and Chinese medications are to be avoided too. But what/which? Not mentioned. So I'm really clueless & unsure as to which foods are entirely safe or not. From what I read online (sites like http://g6pddeficiency.org/wp/living...-deficiency-foods-to-avoid-list/#.UuazJHjXfCR), it seems a huge long list (due to soy which is so commonly found in many foods). Does any mommies have a more detailed list from doctors/pds/hospitals? Also, what are your opinions on soy-related foods e.g. soy sauce, beancurd etc? Safe/unsafe to consume?
2) I have been told (by pd) that I should be a carrier, hence my baby girl got it from me. But when I do research abt this "inheritance thingy" online, it seems that carrier also means "partially deficient", unlike the usual common understanding by most people that carriers are not affected at all (otherwise pd would have told me to avoid too). Here is a link to share: http://www.rddiagnostics.com/g6pd_faq.htm#11. Not only this site, I read alot of sites saying the same thing. So I am actually hoping now that I am also "partially deficient" & mild case like hers so it would mean I don't exactly have too much to worry abt since I ate so much of the contradicted foods/drugs already...
3) In relation to issue 2), do you know where we can test for g6pd deficiency & the quantitative test? Is it only in hospitals? & does anyone know what is the cost like?
4) Just wondering, is there any g6pd specialists out there in sg?
5) Formula milk - I am intending to feed my little girl fm now that she has turned 1 yr old... But I realized that most (or all?) formulas have soy in them. Another would be Vitamin K1, which I found in this list: http://g6pddeficiency.org/wp/living-with-g6pd-deficiency/drugs-to-avoid-list/#.Uua2XXjXfCR, which is of low risk.
Are there formulas without soy in them? & what do you mommies recommend/give to your babies/toddlers? My pd recommended S-26 Gold & Pediasure because she is a little on the smaller side. & then I noticed Pediasure has "Colour" under its ingredients and so it makes me wonder if it's any artificial coloring which is again, to be avoided. I really don't wish to be feeding my girl something daily for a long period of time which affects her in any way (causes hemolysis).
6) What do you think about the long term hemolysis that is said to be harmful to health in the long run? What I read was, even though if it looks like normal on the outside, but eating contradicted foods can still cause hemolysis and may not be serious enough to show symptoms... Here's a link to share: http://g6pddeficiency.org/wp/g6pd-deficiency-home/hemolytic-anemia/#.Uua5TXjXfCQ. & I somehow also have this impression that most pds/doctors will dismiss this low level hemolysis thingy because 'nothing' really happened.
I may sound super kiasi to some of you but I'm just a concerned mommy who really just wants to play it safe since now I'm breastfeeding so I have that strong responsibility feeling to be careful enough not to be 'feeding' her with any contraindicated foods...
Would love to hear any advice/opinions/comments to share from other mommies... Thanks in advance! & was thinking whether we might want to have a group where we could gather all mommies with g6pd deficient babies/kins to share info/ask questions with each other? I realized there isn't much info/support on g6pd...
I was surfing the internet for more info (has always been doing so) & chanced upon this forum! My little girl just turned 1 yr old this month & is g6pd deficient. Makes me keep wondering how come she is g6pd deficient when my hubby (he said he did test during NS so should be clear) & I (I had no idea I may be a carrier, my parents didn't even know what g6pd was too before my little girl popped) don't have it... So I guess I must be a carrier. I have a couple of issues to share/seek your opinions on actually. In fact, I know people with g6pd deficiency can still lead normal lives (thankful she is all healthy & normal otherwise) but I can't help but feel stressed (esp over food restrictions) and yes, upset too, like I brought it upon her. Initially, when the pd came to inform me, I blamed myself hard.
Anyway, I'm breastfeeding still, so I am avoiding many foods in fear of affecting her. The 'lucky' thing so far is, she is diagnosed with supposedly mild deficiency, but also makes me also wonder if that means it would be even harder to know if any foods/drugs did affect her in any way? And that people around me might take this even more for granted?
1) I understand that mothballs and fava beans are a big no no. But what abt the rest? I got a pamphlet (from my pd) under HPB which is quite general stating that certain beans, nuts and Chinese medications are to be avoided too. But what/which? Not mentioned. So I'm really clueless & unsure as to which foods are entirely safe or not. From what I read online (sites like http://g6pddeficiency.org/wp/living...-deficiency-foods-to-avoid-list/#.UuazJHjXfCR), it seems a huge long list (due to soy which is so commonly found in many foods). Does any mommies have a more detailed list from doctors/pds/hospitals? Also, what are your opinions on soy-related foods e.g. soy sauce, beancurd etc? Safe/unsafe to consume?
2) I have been told (by pd) that I should be a carrier, hence my baby girl got it from me. But when I do research abt this "inheritance thingy" online, it seems that carrier also means "partially deficient", unlike the usual common understanding by most people that carriers are not affected at all (otherwise pd would have told me to avoid too). Here is a link to share: http://www.rddiagnostics.com/g6pd_faq.htm#11. Not only this site, I read alot of sites saying the same thing. So I am actually hoping now that I am also "partially deficient" & mild case like hers so it would mean I don't exactly have too much to worry abt since I ate so much of the contradicted foods/drugs already...
3) In relation to issue 2), do you know where we can test for g6pd deficiency & the quantitative test? Is it only in hospitals? & does anyone know what is the cost like?
4) Just wondering, is there any g6pd specialists out there in sg?
5) Formula milk - I am intending to feed my little girl fm now that she has turned 1 yr old... But I realized that most (or all?) formulas have soy in them. Another would be Vitamin K1, which I found in this list: http://g6pddeficiency.org/wp/living-with-g6pd-deficiency/drugs-to-avoid-list/#.Uua2XXjXfCR, which is of low risk.
Are there formulas without soy in them? & what do you mommies recommend/give to your babies/toddlers? My pd recommended S-26 Gold & Pediasure because she is a little on the smaller side. & then I noticed Pediasure has "Colour" under its ingredients and so it makes me wonder if it's any artificial coloring which is again, to be avoided. I really don't wish to be feeding my girl something daily for a long period of time which affects her in any way (causes hemolysis).
6) What do you think about the long term hemolysis that is said to be harmful to health in the long run? What I read was, even though if it looks like normal on the outside, but eating contradicted foods can still cause hemolysis and may not be serious enough to show symptoms... Here's a link to share: http://g6pddeficiency.org/wp/g6pd-deficiency-home/hemolytic-anemia/#.Uua5TXjXfCQ. & I somehow also have this impression that most pds/doctors will dismiss this low level hemolysis thingy because 'nothing' really happened.
I may sound super kiasi to some of you but I'm just a concerned mommy who really just wants to play it safe since now I'm breastfeeding so I have that strong responsibility feeling to be careful enough not to be 'feeding' her with any contraindicated foods...
Would love to hear any advice/opinions/comments to share from other mommies... Thanks in advance! & was thinking whether we might want to have a group where we could gather all mommies with g6pd deficient babies/kins to share info/ask questions with each other? I realized there isn't much info/support on g6pd...